Monday, June 17, 2013

Bits and Pieces: Long Time, No See Edition

Well, it’s time once again for another Bits and Pieces post, featuring a collection of MS related news items that have made their way from my eyeballs to my brain pan over the last couple of months. It’s been a while since I’ve done a Bits and Pieces post, the reason for which I can’t really think of at the moment. As some long time readers have noticed, I’m not posting quite as frequently as I used to, but have no fears, my disease hasn’t taken a dramatic turn for the worse, nor have I fallen off the face of the earth.

Isn’t that a stupid expression, “fallen off the face of the earth”? I’m pretty sure nothing has ever fallen off the face of the earth, as leaving the face of the earth for even a split second takes a fair bit of exertion, requiring the likes of jumping, skipping, hopping, or some other form of vertical derring-do. These days, given the effects of my creeping paralysis, I’m far more likely to be partaking in some derring-don’t than derring-do. MS turns derring-do into derring-doo-doo. Aren’t you glad that the disease hasn’t affected my level of maturity. You’re only young once, but you can be immature for the rest of your life…

Sure, the disease continues to do its demented dance, the crippled fandango, and these days I’m more inclined to go for quality over quantity when it comes to most things. Except, of course, zombie movies. After doing some extensive privately funded research, I’ve discovered that sometimes “bad” zombie movies can be more enjoyable than “good” zombie movies, a realization that has thrown my entire concept of “bad” and good” into crisis. Quite the philosophical quandary, and one that might only be resolved by watching more zombie movies.

I know, many of you are suddenly thinking “Damn it, Wheelchair Kamikaze, now I have a yen to watch a zombie movie, and I have no way of knowing what zombie movies get the Wheelchair Kamikaze stamp of approval!” Have no fear, I couldn’t in good conscience leave you jonesing for a zombie flick without making a recommendation, so here’s a good one: Dead Snow (click here), a Norwegian take on the genre, in which some snow sport loving Norwegian students face off against a regiment of long dead Nazi SS soldiers over a lost hoard of World War II gold. What’s not to like?

Okay, when I started writing this I had no idea I’d veer off into zombie territory, which on its face would seem to have nothing to do with MS. But MS, with its delightful potpourri of spasticity, paralysis, and brain fog, can certainly make one feel like a zombie, and on more than a few days I’m pretty sure the average zombie could beat me in a race to get a physical copy of and then complete the New York Times crossword puzzle. Hey, now there’s an idea for a screenplay, a zombie movie of my very own! Somebody get me in touch with Spielberg, this idea has “green light” written all over it. We can call it Dead Tired.

Okay, with visions of zombies playing word games dancing in your head, I present my latest collection of MS news and notions…

♦ Let’s start with some of the latest news in the world of MS drugs. There is an increasing awareness among MS researchers and clinicians that early treatment is very important in potentially lessening the severity of a patient’s multiple sclerosis (click here). Researchers now talk of a “window of opportunity”, early on in the relapsing remitting disease process, when treatment can make a big difference in the aggressiveness and destructiveness of the disease. Recent advances in MRI imaging, along with physical studies of MS brains (through biopsy or postmortem examination) have revealed that neurons suffer damage far earlier in the disease process than was previously thought. Once neurons are damaged, they stay damaged, so early intervention to minimize that damage may prove to be vital. There is quite a lot of disparaging of the available MS treatments on MS Internet forums and Facebook pages, much of it deserved, but there is some compelling science to back the notion of early treatment, such as this study (click here) which showed a significant impact on mortality rates between treated and untreated patients over the long term (21 years). In other words, this retrospective study found that patients treated with interferon lived longer than untreated patients, a result which cuts right to the bottom line, don’t you think?

Lost in all the hubbub over the introduction of Tecfidera was MS drug giant Biogen’s application for FDA approval for its new interferon drug Plegridy (click here), which is basically a reworked version of Avonex that would require patients to inject themselves only once every two weeks. Trials showed its effectiveness in reducing relapse rates and enhancing lesions to be in line with those of the other interferon drugs (Betaseron, Avonex, and Rebif). The interferon drugs don’t benefit all RRMS patients (approximately 1/3 of patients respond to interferon treatment), come with their own drawbacks (flulike symptoms), and there is ongoing debate whether they impede disease progression, but if you feel that they do work for you and you’re not inclined to rock the boat, then, once approved, Plegridy might allow you to cut down on the number of injections you have to give yourself without switching to an entirely new class of drug.

On the always interesting (to put it mildly) Tysabri front, the good folks at the Multiple Sclerosis Research blog (click here), which is compiled by some world-class MS researchers in London, have put together an easy to understand slideshow explaining the latest on Tysabri’s effectiveness, and the risk of PML for different subsets of patients (click here). If you are currently on the drug, or considering going on it, this is really must-read information. In a nutshell, it reveals that one in three Tysabri patients appear to be free of MS disease activity (that’s the good news), but that the PML rate is as high as 1 in 94 for JC positive patients who had previously been on immunosuppressive therapies and have been on Tysabri for more than two years (that’s the bad news). In related news, a just-released study raises concerns that the blood test given to Tysabri patients to determine whether or not they are JC virus positive may result in a high number of false negatives (click here). The JC virus is the bug that causes PML, and the risk of developing PML while on Tysabri for JC negative patients is almost nonexistent, but increases exponentially for patients who test JC positive. Therefore, the accuracy of the test for JC virus is imperative for correctly assessing the PML risk of individual patients. Let’s hope the scientists get their shit together on this one, and soon.

♦ The nation of Iran seems to be experiencing an epidemic of multiple sclerosis, the rate of those affected with the disease increasing almost sevenfold between 1989 and 2005 (click here). If the disease continues its rapid spread, one source estimates that in 10 years every Iranian family will have one member suffering from multiple sclerosis (click here). The cause of this dramatic spike in MS cases is a mystery. One theory is that since the country’s Islamic Revolution in 1979, adherence to strict Islamic law has mandated that women cover their heads and bodies, limiting their exposure to sunlight and thus lowering their levels of vitamin D. Low levels of vitamin D are increasingly being linked to MS, so this theory may have some merit. However, other countries that have no such clothing mandates, such as southern Italy, Norway, and Japan are also experiencing marked increases in MS, and we are also seeing alarmingly high rates of MS and other neurologic diseases in US military personnel returning from the Middle East. Likely, a mix of environmental factors is at work.

Iranian researchers are setting their sights on MS, and one study of 400 patients revealed that smoking increases the risk of RRMS transitioning to SPMS (click here). Yet another reason to stop smoking, if you already haven’t. As a former smoker, I know how difficult it can be to give up the coffin nails, as I used to love the damned things. But MS and smoking definitely don’t mix, and besides, current laws and restrictions have made smoking a tremendous pain in the ass. Here in NYC, smoking is banned in most buildings and all bars and restaurants, and even in Central Park. The 49 story high-rise building I live in is a non-smoking zone. To top it all off, in New York cigarettes cost more than seven dollars a pack, so if they don’t kill you they’ll soon force you into bankruptcy. Really though, was there ever a more delectable pleasure than sitting in a bar with friends, getting sloshed while smoking your brains out? Those were the days my friend, we thought they'd never end, but then everyone got cancer, emphysema, and multiple sclerosis.

According to a newspaper in Azerbaijan, Iranian scientists hard at work on the MS problem have come up with a cure, called (I kid you not) MS Nut (click here), “an herbal substance that can completely cure multiple sclerosis”. Color me skeptical. Also color me jealous, because I always thought of myself as the “MS Nut”, and now the Iranians have stolen the moniker of my alter ego. Crap.

♦ Speaking of MS nuts, a Texas photographer discovered a collection of preserved human brains at the University of Texas at Austin, taken from patients who died at the former Texas State Lunatic Asylum between the 1950s and the 1980s (click here). Labels on the jars revealed some of the conditions for which the brains’ former owners had been committed to the asylum, among which were Lou Gehrig’s disease and, you guessed it, multiple sclerosis. At least we can be thankful that they’re no longer locking up MS patients in lunatic asylums, but I’m not taking any chances. If I see any sinister looking men in white coats heading my way, I’ll be Wheelchair Kamikazeing it right the hell out of there…

♦ And now for one of my favorite topics, adventures in asinine MS research. One such study, evaluating the risk factors contributing to falls in PwMS, followed 148 patients who had mobility issues but were still ambulatory (EDSS 3.5-6.5) over a three-month period (click here). The findings? “Continence issues, previous falls history and use of prescribed medications were each associated with increased risk of being a "faller". Holy moly, this changes everything! You mean people afflicted with a crippling illness who have serious mobility issues, have taken a few tumbles in the past, ingest copious amounts of prescription drugs that can cause extreme fatigue and balance issues, and at times suddenly find themselves about to crap and/or piss in their pants might be at risk of face planting as they desperately struggle to make their way to a toilet? I’m shocked!

I propose that as a reward for this massive contribution to science, the investigators involved in this study be forced to experience some of what their research subjects go through on a daily basis. Let’s gather our esteemed researchers in a room at least 50 yards from the nearest lavatory, attach lead weights to their legs, tie their shoelaces together, and make them each drink a gallon of water as they swallow large handfuls of laxatives. As soon as our scientists turned research subjects start feeling the need to “go”, we’ll smack them in their heads with a medium-size frying pan to simulate the effects of an MS pharmaceutical cocktail. I’m no expert, but I predict we might just witness a few falls, along with some other, er, less pleasant phenomena. I’m positive a Nobel Prize awaits…

♦ Okay, now that we’ve got science is out of the way, let’s turn to the arts. Artist Veronica Wilson, who works in glass, has been an email friend of mine for a few years now. In addition to writing very entertaining emails, Veronica creates fabulous stained-glass art pieces even as multiple sclerosis puts a crimp in her mobility and now impacts the use of her hands. Veronica is a member of the Frog Valley Artisans (click here), and lives and works in Berkeley Springs, West Virginia. Here’s a very nicely done short video profile of Veronica and her work…

Well, that’s it for this edition of Bits and Pieces. I have some zombie friends waiting for me on my DVR…

27 comments:

Hey!! Amusing emails, too? I need to write more, but, I'll get there. thanks for posting the video, right now Mark, my hubby, is winning the view counts, but I know that I will start pulling ahead, now!!!

Hi Connie, no, I don't think you missed the post, I just haven't mentioned the supplements lately. I'm still taking them, but I can't really say they are doing anything beneficial. Then again, they're not doing anything detrimental, either, and who knows what kind of shape I'd be in if I wasn't taking them? They all have antioxidant properties, which is a good thing, so I figure why not just keep on keeping on…

It sure seems like it's something environmental. Interesting that the rise in MS in the Middle East appears to coincide with the first Gulf War, when so many oil wells were set on fire, spewing all kinds of crap into the atmosphere. Then there are all the expended munitions, many of which used depleted uranium.

Autoimmune diseases in general seem to be exploding in many places around the world. Strange.

As for adventures inside the mind of WK, believe me when I say it's a nice place to visit, but you wouldn't want to live there… Actually, not such a bad place to live, lots of nooks and crannies filled up with all kinds of dusty crap…

I. for one always get a little buzz in my lower extremities when I check my emails and see one from WHEELCHAIR KAMIKAZE!! It doesn't matter what topic you write about . . .its how you write that keeps my spirits up.Hope you are well as can be expected.

I have to admit, my mind took a slightly more morbid take on ways to leave the face of the earth. Perhaps it's the side of me which just finished a two day collaboration workshop with an exercise that unintentionally showed the value to the group of decent from the groups purpose. In any event, one can also leave the face of the earth when entered into the earth (buried).

On the other new Tysabri news front, I had always seen the numbers as the rebound effect from stopping Tysabri happens for no more than one in three. I've seen this on numerous websites, and my neurologist quoted it to me the last 2 visits as he presents options should I want to stop Tysabri due to high number of infusions and being JC+. In any event, http://www.medicalnewstoday.com/releases/261719.php has a study where all 7 patients who stopped Tysabri had at least 40 new lesions within 11 months. If the true odds are 1 in 3, than the odd against this study's results are 1 in 2,187 (3 to the 7th power).

We talk about risks of taking them and continuing medications.I keep wondering why so little is made of the effects of stopping medications we take.

I hadn't previously considered that one could leave the face of the earth by being buried beneath it, but that is indeed true. Not sure that this would qualify for "falling off the face of the earth", though, which would seem to imply something more happenstance than a deliberate planting in the ground. We'll have to leave this one up to the judges…

The Tysabri rebound relapse effect is definitely problematic. Although the study you cite does state the number of increased lesions, it doesn't state whether or not these lesions coincided with relapses. Even if they didn't, the rapid increase in lesion load is disturbing. Since Tysabri selectively suppresses the immune system, one could imagine that upon reconstitution the immune system might resume its attack on the CNS with a fervor.

I know that AIDS patients whose immune systems rebound after they take powerful anti-HIV medications sometimes develop autoimmune diseases as a result of their immune system reconstituting itself. The Tysabri rebound effect would seem to follow a similar pattern…

I have seen the anti-pharma treatment commments on several Facebook pages. Given the new findings that early treatment slows down MS progression, are the owners of these pages then acting unethically and against our best interests when they make comments opposing anti-pharma treatments in favor of alternative, "natural" treatments?

I don't think the owners of Facebook pages that disparage Big Pharma and their products are acting unethically or against the best interests of the community, they are simply expressing their own opinions. I've done plenty of Big Pharma disparaging on this site as well, but I also realize that the disease modifying drugs, as imperfect as they are, do have value. Even if they don't do anything to impede the progression of the disease (the jury is still out on that), they do significantly improve the quality of life for many of the MS patients taking them, and that in and of itself does have value.

Folks who favor alternative or natural treatments certainly have important information to disseminate, but no patient should rely exclusively on the information provided by any one website, including this one. Many of the criticisms of the current crop of DMDs are right on the money, as none of these drugs do anything to cure the disease. Still, to deny that they help patients is quite myopic. I personally can't understand why some folks get "wedded" to a particular treatment or mode of therapy. As far as I'm concerned, if something is working for somebody, great, but what works for one very often does not work for the many, especially when it comes to alternative therapies.

As for Big Pharma itself, the problems lie in the fact that we've allowed the pharmaceutical companies to dominate medical research. Since these are for-profit companies, they naturally fund research that has the potential to expand their bottom line. This is simply the nature of the beast; the job of a pharmaceutical company CEO is not to rid mankind of dire diseases, but to constantly increase his company's profit margins. The evil lies in the system itself, not in the people populating it.

whew! thanks for all of that. i make an effort to refrain from collecting zombie and disaster movies on my dvr, because i'd just sit and watch them all day, while my brain - what's left of it - turns into stuff even a zombie wouldn't want. tho when i do my little bits of assisted walking, i think i look like a zombie.

Great bits and pieces! Love the stain glass. Really beautiful colors. Earlier today I looked up what the earliest case of MS was. MS was first diagnosed in 1849. However, the earliest known person with possible MS (symptoms described were similar to MS) dates all the way back to the fourteenth century in Holland. So it was interesting reading about increased cases worldwide. Always digging for answers, but it still makes absolutely no sense to my 'dead tired' brain. And you definitely got me...now I need to see a 'bad' zombie movie!

It is fascinating to delve into the history of MS. I've searched through the online New York Times archives for early mentions of MS, but the disease wasn't commonly called multiple sclerosis until the 20th century. Many early references call it "creeping paralysis", which I think is a much more descriptive name. Of course, I'm sure "creeping paralysis" included any number of other diseases, which weren't differentiated back then.

Some of the best "bad" zombie movies are those from the 1930s and 40s, in which the zombies are always connected to voodoo and witchcraft. Some of them are unintentionally hilarious. Who knows, maybe it was intentional? There are lots of good "bad" zombie movies on Netflix, so have at them!

I looked a bit more into the creeping paralysis after reading your reply. Really interesting and I was horrified to read that Sigmund Freud attributed female cases to hysteria while males were recognized as having MS!? Wow what a tool (yes I said tool).

Hi, I keep clicking the email me tab but unfortunately it doesn't seem to work for me. Could you please send me your email address. I have a family member with MS and would like to ask you some advice. My email: Gaura.sengupta@gmail.com

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...